In devastating news nine-year-old Aurora Pile-Gray from Westbrook has suffered a severe relapse with cancer progressing to her skull, eyes, neck, spine, liver, kidneys, lungs, abdomen and pelvis.
Aurora had been declared in remission at the end of November but in a cruel blow the disease has now spread
Aurora was diagnosed with stage 4 Burkitts Lymphoma after becoming poorly towards the end of April.
The rare cancer affects blood and bone marrow. Aurora has been undergoing chemotherapy and her family were looking at CAR-T cell therapy and an allogeneic transplant.
Earlier this year, after 4 gruelling cycles of intensive chemo, Aurora had been given the news that she was in remission, however this was short lived.
In October the family were told the cancer had in fact spread to Aurora’s bones and that the youngster was in need of a bone marrow transplant. The situation was also complicated by Aurora’s mixed ethnicity, making it that much more difficult to find a match.
At the end of November there was hope with the disease in remission and a bone marrow match donor found. The family were anticipating a move forward with transplant this month.
But just five days away from life-changing transplant preparation came the heartbreaking news of the relapse and a terrifying wait until Monday to find out what options remain.
Mum-of-three Keisha has been writing a painfully honest blog about her daughter’s battle against the disease and the family’s fight for her treatment.
Here, in her own words, she explains the terrible news:
I write a lot when I’m sad. I’ve always found that it’s a way of getting everything out of my brain, even if nobody reads it, but this is by far the hardest thing I’ve ever decided to write. My gut won’t settle, and when I’m busy I can cope, but the minute I’m still, I cry and I feel like I’ll never stop.
When I returned to The Marsden on Christmas Eve, Aurora was swollen again. This wasn’t abnormal, but my gut didn’t sit right. I gave it a day to see if it reduced, but it didn’t, it just got progressively worse. Aurora has been on prophylactic antibiotics, alongside IV antibiotics, but none of them seemed to be helping. She was prescribed antibiotic eye drops, piriton and steroids in case it was an allergy, but her swollen little face didn’t improve.
I think I’d made the connection in the back of my mind before they told me. I kept thinking back to the beginning of the month when it happened before, I said that something was different. I didn’t know what it was, I didn’t know if it was a medication she’d become allergic too, but that’s what I hoped.
The consultant who had observed her on December 30 came back to see me when Rory was away at her PET scan. She said she was concerned the swelling hadn’t improved despite the broad spectrum antibiotics and antihistamines, and an MRI would be needed. Since it was bank holiday, and a weekend, it wouldn’t be booked until the following week, and they weren’t convinced that a PET scan would be enough since the brain was hot and can mask the imaging of the eyes.
I asked what the concerns were, and it was a case of infection which could prevent transplant, or her disease had returned.
But the minute she said it, my brain went into overdrive, and I realised what the connection was. I realised what had been different at the beginning the month, when her eyes had started swelling and then subsided. The only thing that had been different was chemo. Her swelling reduced gradually as she went through her second cycle of R-ICE, which only meant one thing. In my head I’d already convinced myself it was cancer, but I wanted to speak to the consultant again, because once something is in my mind I do cartwheels and I start overthinking everything.
Before the results from her PET were back, the consultant told us that given everything going on, it was highly likely that her eye swelling was caused by the lymphoma returning, and by my estimations, chemo was keeping her cancer at bay for around 3 weeks. We were 5 days off conditioning for transplant, 5 days off hopefully changing her life for good, only to be told that it was likely that this wasn’t going to be the case. Her bone marrow was relatively empty because counts hadn’t recovered, but what was there was also suggestive of relapse – again.
We spoke about starting steroids to reduce the swelling of her eyes, but this could lead to inaccurate results in her next bone marrow aspirate that they’d scheduled on Tuesday, scheduled so that they could assess the disease when her counts had recovered.
A relapse of Burkitt’s lymphoma once is bad, but twice leaves limited options. To continue with chemo would leave the risk that Aurora’s cancer would become resistant, and it was already looking that way. If the lymphoma had returned, her best chance would be targeted therapy, but it’s another case of being accepted on a clinical trial. This was the conversation we had before the PET scan, but the PET scan went worse than we could have ever imagined.
I’d only just got home last night when Aurora’s dad called and put me on loudspeaker to the consultant. I’d already prepared for them to say that it was lymphoma, my gut had been telling me for days, but I hadn’t prepared for her to tell me that Aurora’s cancer was everywhere. We hadn’t expected results until Monday, but the results showed severe disease involvement, and waiting until Monday wasn’t an option. We’ve had no choice than to start steroids.
Aurora had an MRI on December 23 which was a routine reassessment scan prior to transplant. When her eyes began to swell they went back to the MRI to assess as to whether or not there was anything to suggest relapse, but other than mild sinusitis, it was clear. Eight days later, her PET scan showed the disease was now apparent in the base of her skull, the bones in her face, her upper and lower eyelids, her neck glands, chest, lungs, spine, abdomen, kidneys, adrenal glands, liver and her pelvis. Our only saving grace is that it isn’t encroaching on her spinal cord so far, but if it does, then she could potentially lose the use of her legs, and control of her bladder and bowel.
The disease involvement is extensive, and since it’s a weekend, a coherent plan couldn’t be made until Monday. I am always complaining about weekends, because although the nursing staff are amazing, the most important decisions can’t be made, decisions that we need. I remember before saying that one day Aurora isn’t going to have 24 hours to wait for a decision, back when we were told her lymphocyte count hadn’t come up enough for T-Cell harvest, and it couldn’t be more relevant now.
Steroids are fine, they’re the first line of treatment in lymphoma, but my daughter went from having a clear MRI, to having a head full of cancer in 8 days so waiting an entire weekend for a plan to be made has my stomach doing flips every minute of every day…. and that’s if there’s a plan.
Nobody expected her relapse to be this bad, not one of us. We thought we might have caught it early. I’d been worried for days about her platelets keep dropping but I was told it was common for post chemo recovery, which it is, but my gut always knows when something is wrong, and I wish I’d gone with it sooner.
On Monday we have to discuss what options we have left. We were already told that it’s notoriously hard to cure after her initial relapse, and that was when it was isolated to her bone marrow, not when it covered her entire upper body. Now, I’m petrified that they’re going to tell me there’s nothing they can do, that her cancer is too severe. They’re either going to give me a plan, or they’re going to give me a time frame, and I’m not ready for either of them.
How many times can I tell Aurora that treatment hasn’t been successful? And tell her that she needs to go through something harsher to survive? How much more can her little body take when it’s already been through so much? I honestly don’t know, I don’t know what’s best anymore.
As long as there’s options, we’d never give up. As long as there’s breath left in my body.. but it’s conflicting. What if we go ahead with treatment and it’s unsuccessful, and she hasn’t had a chance to see everyone she loves the most? What if they tell me there aren’t options? Do I bring her home? Do I demand they try something? Do I put her through that, and sacrifice time with her siblings, her family, everybody else who is heartbroken. I want her to be home with us so badly it hurts.
At initial relapse, Aurora had a 10% chance. Now, we don’t even have a number. I just don’t know how I’m supposed to make a decision, a decision which almost certainly leads to me saying goodbye to my baby.
People have been supportive, they’ve told us to have hope, have faith, keep praying, but reality has hit me hard this week, and the reality is we’re potentially living on borrowed time. I don’t mean to be pessimistic, but I’ve lived through this for 8 months, and I’ve seen children who fought and fought to the bitter end. I know how cruel this disease is, and a second relapse is another world of treatment than we aren’t used to.
I could write a million posts about our journey, but it would never come close to describing how it actually feels, to spend each day in limbo, and each day asking questions you never thought you’d have to ask. I shouldn’t have to have thoughts about saying goodbye to my baby, or planning a funeral, but I do. I can’t shake myself out of it because I’m petrified. I’m scared and I’m in pieces at the fact that nothing seems to be working, and each time it’s back, it’s worse.
There isn’t a way to sugarcoat it, this is as bad as it gets. We’ve got another 2 days before we find out whether they can save our baby or not, and whether she has time to enrol for the clinical trial that’s been suggested, and whether she’s eligible. 2 days of worrying about what 2021 is going to bring, and where we go from here.
I’ll be reaching out again to hospitals all over the world, to see where we go from here. Research I’ve done so far hasn’t been productive, because this kind of pattern in paediatric cases is so uncommon, there isn’t a go to method for treatment and the saying is true, it takes a village to raise a child. Aurora’s initial relapse was discussed up and down the nation, but I’m clutching at straws, and holding on to anything I can.
We began fundraising for America in the event that this happened, but we don’t know if there’s better options there or anywhere in the world right now. I honestly don’t know what I’m meant to do, where I’m meant to look, or where I’m supposed to go, but I know I’ll never give up fighting for our baby. I don’t know how to live without her…
Find Keisha’s account of the family’s journey at https://growingpainspaperplanes.wordpress.com/
Our thanks to Keisha and family for bravely allowing us to publish her words and photos.